$50 could have saved him but his GoFundMe pitch didn’t get the clicks

This piece originally ran in the Boston Globe

Shane Patrick Boyle lost his mother in March of 2017. You’ve heard this story before, or at least one like it, but you should listen again. It’s about Boyle but it’s also about the rest of us.

About a month earlier, the well-liked Boyle, founder of Zine Fest Houston, had moved to Arkansas to care for his ailing mother, and in the process lost an arrangement he had with a local clinic at home in Texas to get the medication he needed to live at cost. So he did what has become natural to many of us in times of medical need today: He set up a GoFundMe.

For weeks, according to Ted Closson, a comic book artist and friend of Boyle’s, the campaign languished just short of its $750 goal by $50. A few days later, Boyle died of complications from type 1 diabetes.

There are about 250,000 such requests for funds on the site in any given year, GoFundMe reports. Since GoFundMe started in 2010, one-third of the roughly $5 billion in donations made through the popular fundraising site has been used to cover people’s medical bills and health care related expenses.

Unlike other campaigns, such as artistic projects or business startups and so on, GoFundMe does not take a cut of the money raised, which makes sense because it would be immoral to make money off sick and dying people, wouldn’t it? You would have to be a despicable person to profit off of that sort of thing wouldn’t you?

I don’t know if you feel any portion of blame for Boyle’s death, but you should, much like I do. Because every day that goes by without the passage of universal health care for every American is an abrogation of duty and an absolute failure of responsibility. You and I may not bear as much blame as drug makers like Eli Lilly (who announced just this week that they will finally be offering a generic version of insulin for a 50 percent discount after sustained criticism from patients and lawmakers alike for years), but still, at least some of that is on you and me and the representatives we elected.

(Incidentally, diabetes meds have been around since the 1920s, but the price of insulin has gone from $20 per vial in 1996 to around $275 today. I’m not sure how much money Boyle made but David Ricks, the CEO of Eli Lilly makes about $16 million a year, which is very nice for him.)

Not to single out Mr. Ricks. He’s hardly alone among the gilded class of health care and medical execs gorging at the trough of misery and pain like ravenous vampire hogs. Here’s another one that just came across my feed at random, a guy named Daniel Loepp who you’ve never heard of and is the president and CEO of Blue Cross Blue Shield of Michigan. He must be very good at his job since he made $19.2 million in 2018, up from from $13.42 million in 2017, which, for rough comparison, is more than, say, Kyrie Irving makes a year. Then again people like Loepp are a bit better on the defensive end, swatting away requests for coverage left and right. Elsewhere in the upper echelons of health care. By comparison, Michael Neidorff, CEO of insurance company Centene, made $25.26 million in 2017, according to Crain’s Detroit. Joseph Zubretsky of Molina Healthcare made $19.74 million. David Cordani of Cigna made $17.55 million. Bruce Broussard of Humana made $14.87 million.

Shane Patrick Boyle of Houston didn’t get the final $50 he needed to live, but the memorial page set up for him and his mother after their deaths ended up raising $5,150 of the $5,000 goal, which is great news until you remember the fact that they died.

The reason they were able to raise so much more money in death than in life is the defining reality of our current ad-hoc crowdfunding insurance system. The circumstances of deaths were particularly grim and newsworthy and therefore captured enough attention to get people to pony up.

And that lingering $50 difference between living and dying? That is what made the story notable. Sickness and death are boring, but sickness and death with an angle? Now we’re talking.

In our broken health care nightmare, you need to get sick and suffer and die in a fashion remarkable enough for anyone to care. If it were otherwise, we wouldn’t be talking about Boyle and his mom and Mr. Ricks.

Take a quick browse through the medical section of GoFundMe and check out the top trending stories: a young mother in Rhode Island with cancer who’s raised almost $60,000; or an elderly musician in Houston who’s brought in $24,000 to help with congestive heart failure. Each of these stories promoted on the site have something in common: a hook compelling enough to get attention.

Here’s another one real quick because we could fill the entire newspaper with stories like these. Hedda Elizabeth Britt, a 60 year-old Michigan woman who I wrote about back in November, is waiting for a heart transplant. It’s a position she is exceptionally fortunate to be in, relatively speaking, because the committee at Spectrum Health Richard DeVos Heart and Lung Transplant Clinic* originally told her she would not be placed on the waiting list because she was too poor to save.

Britt was denied “due to needing more secure financial plan for immunosuppressive medication coverage,” they told her in a letter, saying they recommended a fundraising effort of at least $10,000.

Fortunately for Britt, the letter, which she posted to Facebook, wound its way through the whims of the viral-making apparatus to garner enough attention from outraged people that she’s now managed to crowdfund over $30,000. In other words she may be rich enough to bother trying to save now. But that’s only because of the outrage people felt at seeing a hospital say the quiet part out loud.

Are you disgusted and if not why not? I’m so disgusted when I think about this morally repugnant system that I’m afraid I might have a stroke and that would be terrible because there’s no way I could afford it.

One study in 2009 found that 45,000 deaths a year are associated with lack of health insurance. Medical debt is currently the most common reason people are contacted by debt collectors, and in a 2017 poll 63 percent of Americans said a large medical debt they can’t afford is worse or equal to the serious illness itself.

Putting the burden on fundraisers for our medical care has become de facto institutionalized to the point that our doctors are recommending it. It should not be that way. Even the CEO of GoFundme thinks so.

“I would love nothing more than for ‘medical’ to not be a category on GoFundMe,” Rob Solomon told Kaiser Health News recently. “The reality is, though, that access to health care is connected to the ability to pay for it. If you can’t do that, people die. People suffer,” he said. “There has to be a renaissance, a dramatic change in public policy, in how the government focuses on this and how the health care companies solve this.”

Ah, but how will we pay for it, you might be thinking. Here’s the answer to that: I do not care. Take it from the CEOs. Is that fair? I do not care. The way the current system works is that when someone gets sick some of us band together to chip in a few bucks through a third party platform so that some of the rest of us can get better and live. But what if, and hear me out here because this is wild, all of us chipped in a little bit to ensure that everyone could get the help they need? What would you call that?

Last week while introducing her Medicare for all bill, Rep. Pramila Jayapal of Washington brushed aside questions of how it would be paid for. No one ever asks that question when it comes to the military budget, which Republicans and centrist Democrats alike are all too eager to fund to demonstrate how much they care about Americans’ safety, she said.

A single person dying for lack of health insurance or enough money to pay for care is a tragedy. Tens of thousands of them dying every year is a Black Mirror-esque nightmare. You would think if there were something else killing so many of us at such a fast clip politicians would be throwing everything they have at it. What’s stopping us now?

*If you’re wondering, yes, it is named for the billionaire co-founder of Amway and late father-in-law of Betsy DeVos, the US Secretary of Education. Richard DeVos got a heart transplant of his own in the late ’90s at the age of 71 after utilizing his wealth to fly to London to find a doctor willing to perform the surgery.